Ibadan, Nigeria – Before she started to forget things, Elizabeth Mustafa was relearning how to walk. Her diabetic foot ulcer had gotten out of control and her right leg had been amputated.
Leaning on her four-wheeled walker, she would try to manoeuvre herself around the house as someone, usually her daughter-in-law Victoria, accompanied her, watching, guiding, removing objects from her path.
Three years before she lost her leg, in 2010, Elizabeth fled religious rioting in northwestern Nigeria after receiving threats that her house and grocery store would be burned down. Seeking safety, she moved to Ibadan to live with one of her six sons and his family.
She loved telling her four grandsons stories about life in Ghana, where she was born and lived with her parents until 1969 when Ghana’s then-prime minister, Kofi Busia, passed the Aliens Compliance Order, forcing African migrants – many of them Nigerian, like Elizabeth’s parents – to leave.
Now 66, Elizabeth still enjoys telling stories about her life back in Ghana. The boys sit around her in their living room in Alarere, Ibadan, listening attentively and chipping in with anecdotes of their own as she remembers the school she attended, the friends she had.
“They [Ghanaians] are nice people. They show love,” she says in Ashante Twi, before translating it to English.
A smile spreads across Elizabeth’s face as she eases herself onto the brown sofa, holding a small radio to her belly.
“She remembers things from long ago. All others are pockets of memory,” Victoria Mustafa explains gently.
‘Where am I?’
The Mustafas live on a neat, quiet compound. The white-walled living room is punctuated by cream curtains that drape the windows and the entrance to the passageway leading to the bedrooms.
Victoria says this was where they were sitting a few years ago, shortly after the amputation, when Elizabeth suddenly asked: “Where am I? What am I doing here? What’s the name of this town?”
Some mornings, Elizabeth would hold a tube of toothpaste for minutes, staring at it, before finally asking what it was used for. There were times when she could not remember the names of her relatives.
“We were thinking, ‘What’s this? What’s going on?’ We didn’t understand what was happening,” says 42-year-old Victoria, who is wearing a purple shirt – the official colour of the Alzheimer’s awareness movement.
Victoria, who is from Kaduna, first met her future mother-in-law in 2004, two years before she married her son and moved to Ibadan.
“She was active and loved to tell stories,” she recalls.
The change seemed sudden. Initially, the family assumed she was seeking ways to cope with the loss of her leg. Then they grew irritated with her.
“We thought she was just being difficult,” Victoria says.
It was when she started to wake in the middle of the night, struggling to reach her walker, demanding that the door be unlocked so that she could go and open her grocery store, that they realised something was wrong.
‘A pathology of the brain’
Victoria and her husband took Elizabeth to the University College Hospital, Ibadan (UCH), where they were referred to a psychiatrist.
The psychiatrist treated her for depression. But, says Victoria, “after a long time, she was still not well”.
They took her to the hospital again in 2016 and, three years after she first started showing signs of confusion, Elizabeth was diagnosed with dementia.
“I had never heard of dementia,” Victoria says.
Dr Temitope Farombi, a consultant geriatric neurologist at the Chief Tony Anenih Geriatric Centre at UCH, explains that relatives often assume that the early signs of dementia – confusion, irritability, difficulty performing familiar tasks and memory loss – are just normal signs of ageing.
But, Farombi says, “ageing is a physiological process, while dementia is a pathology of the brain. It presents in the form of memory loss and behavioural abnormalities”.
The doctor sits at her desk in her office, explaining that issues affecting older people are rarely reported.
“Early diagnosis helps stall other associated risk factors that could accelerate the progression of dementia,” Farombi explains, adding that “medication can help improve cognition”.
Farombi started working with dementia patients in 2015. She says she looks for signs, like an inability to remember the name of an object (asking for a thing that is used for eating, for example, but not recalling the word ‘spoon’), going to the mall with a shopping list and coming back with nothing, or driving to an event but returning in a taxi.
Other symptoms include difficulty processing instructions, confusion about time or place, being suspicious of people around them, and depression, she explains. People in the later stages of dementia can experience bowel and bladder incontinence and an inability to communicate. “And at the end, you see them bedbound, severely dependent on people,” Farombi says.
A healthy lifestyle and diet can help to reduce susceptibility to dementia, the doctor explains, but “no drug can reverse it”.
The challenge of geriatric care
Love and support from family and early medical intervention can help improve the living standards of people with dementia, says Olayinka Ajomale, a consultant geriatric social worker and the executive director of the Centre on Ageing, Development and the Rights of Older Persons in Ibadan. But, says Ajomale, geriatric care is at an early stage in Nigeria.
UCH is the only hospital in Nigeria with a full-fledged geriatric care centre.
Every year, experts in different aspects of gerontology are invited to conduct training sessions for doctors from across the country at the UCH’s geriatric care centre. “All tertiary institutions should have centres like this, not just units,” says Ajomale.
It can be frustrating, repeating the same thing over and over again and the person does not remember. It takes a toll.
In September last year, the federal government announced a plan to establish six regional geriatric centres in tertiary hospitals.
Globally, the number of people living with dementia is currently estimated at 50 million. The World Health Organization (WHO) reports that by 2050, 80 percent of those aged 60 and over will be residing in low-and-middle-income countries where there is limited access to geriatric care and support such as adequate facilities and trained personnel.
There is a shortage of data on dementia in Nigeria but the data that exists suggests the number of cases has grown dramatically.
“It’s [dementia] increasing but there is no increasing expertise,” Farombi reflects.
It is not just those suffering from dementia who carry the burden of the disease. The stress it puts on caregivers is also a concern.
“It can be frustrating, repeating the same thing over and over again and the person does not remember,” says Victoria. “It takes a toll.”
As Elizabeth’s primary caregiver, Victoria is responsible for her welfare, including checking her blood sugar at least twice a week, ensuring that the doors in the house are open for ease of movement and that there are no objects around with which she could harm herself.
Every morning, after the family say their prayers in the living room, Elizabeth goes to the bathroom. There is a slab on which she sits and then gently manoeuvres into the bath. Victoria tells Elizabeth to raise her arms and wash them, and she does. She tells her to wash her legs, and she does. She helps pour water over her body. Sometimes they sing, sometimes they laugh about an old memory. When she is finished, Elizabeth is helped out of the bathtub, her walker is passed to her and she slowly makes her way into the bedroom to get dressed.
“It limits the kind of work I can do,” Victoria says. “I can’t leave her on her own. I have to be back home to ensure she takes lunch.”
For flexibility, Victoria works selling bedsheets from her car boot, often delivering them to her customers in their homes or offices.
She is also a member of the Dementia Caregivers Association in Ibadan. There are about 30 members, although only 15 usually attend their monthly meetings. The vast majority are women. The group share their challenges and offer advice on how to best care for their loved ones.
Sometimes, Victoria says, a new person comes and talks about how they started praying and fasting when their relative started to show signs of dementia, believing that there was a spiritual cause for the change. When they discover that there are others going through the same thing, they shed tears of relief, Victoria explains. “There is a sense of belonging,” she adds, solemnly.
“We just don’t treat the patients, we also treat the caregivers,” explains Farombi, who usually attends the gatherings. “The meetings make their burden lighter. It also gives them a sense of responsibility. They go out and talk to people about dementia.”
‘Until the battery runs out’
Before the dementia, Elizabeth enjoyed attending social events, spending time with her sons in different parts of the country and playing a leading role in her church. But the disease has changed all that.
The radio has now become one of her regular companions and her window into the world. “Sometimes she listens until the battery runs out,” Victoria explains.
Elizabeth picks up the radio that has been sitting in her lap. “Why is it not on?” she asks, fumbling with the buttons.
“It’s dead, Mama,” answers Victoria. “There’s no light to charge it now.”
The youngest of Elizabeth’s grandsons – a four-year-old with a near-permanent smile – goes to his grandmother’s side and begins to tickle her.
Then he begins singing the times table, and she joins in. When the boy’s knowledge has been exhausted, Elizabeth continues.
“That’s what they do,” Victoria laughs. “The children talk to her, play with her.”
The oldest, who is 12, admits that it can be frustrating when Grandma wakes up in the middle of the night and starts banging on her bed frame.
At this admission, they all break out in laughter, including Elizabeth.
Caring for elders involves more than healthcare, and elder abuse is a very real spectre that hangs over patients and those who care for them.
Ajomale speaks passionately about the issue, which is “not just beating, but pushing, shoving, pulling them forcefully,” he says, his eyes widening as he recalls cases he has encountered over 20 years of social work.
“Some caregivers, children, and grandchildren do this … there’s usually an element of trust between the abuser and the older person.”
The abuse can be verbal, psychological, physical and sexual, he explains, although he says the most common form is physical.
“Most of them (elders with dementia) do repeat stories and people tend to shut them up. That’s emotional abuse,” he says.
There have even been instances of people with HIV raping elderly women, believing that this would cleanse their blood, he says.
Taking elderly individuals away from an environment they are used to and where they have friends, in order to live with relatives elsewhere, can also be harmful. Often, they will be left alone for long stretches of time, with only the television for company, he says. “That is psychological abuse. How do you want them to cope? At the end of the day, they fall into depression.”
Ajomale is also concerned about abuse in hospitals and says that some health practitioners believe it is a waste to spend their limited resources on caring for those who will soon die anyway.
Nigeria has no functional national policy governing age discrimination or elderly welfare. A policy was proposed in March 2003, but it has remained in draft form ever since.
“What made it fail is that it placed too much emphasis on health,” Ajomale explains. “Meanwhile there are other challenges faced by older persons. A policy should be encompassing.”
There was another effort in 2007 that also failed. Ajomale was one of those who drafted the bill.
“But there’s another one in the pipeline,” he says, adding that several ministeries were involved in drafting it. “It has passed the second reading. We have been told to fine-tune it so it’s implementable in all regions of the country.”
Shame, love and medication
A culture of shame remains around dementia in Nigeria. One of the many misconceptions is that people living with dementia are witches.
“We have seen cases where old women were openly beaten or stoned,” says Farombi, “they are pressured to say they are witches.”
Deeply concerned by this, she started the Dementia not Witchcraft Campaign, a series of lectures targeted at different groups in Ibadan.
For a year after Elizabeth’s diagnosis, she visited the hospital every two weeks for monitoring. There has been an improvement since she was first diagnosed and now she is only required to go every few months.
She can remember what toothpaste is used for now and no longer wakes up in the night to go to the grocery store she used to run decades ago. She can also communicate her feelings.
“If she’s hungry, she will say it,” says Victoria, adding: “The drugs have really helped.”
Elizabeth’s favourite food is amala. “Amala and fish,” adds one of the boys. “Amala pokipoki,” Elizabeth says, and everyone laughs.
“[Our] communication changed, the aggression was removed, we showed her more love,” says Victoria. “It’s still tasking, but the emotional pressure is no longer the way it used to be.”
Elizabeth looks at the radio on her lap for a moment. She then takes it to her ear. “Why is it not working?”
“Because it’s dead,” Victoria reminds her. “No light to charge it now.”
“I’m hungry,” Elizabeth announces. Within minutes, Victoria places a plate of amala and ewedu before her. “The most important things,” Victoria concludes “are medication and love.”